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Dementia: The ending no one wants
My mother is trapped in a broken body and demented mind, says Michael Wolff. Is it cruel to keep her alive?
 
Dementia affects more than 5 million people in the U.S., and by 2050, more than 15 million people will suffer from the debilitating disease.

Dementia affects more than 5 million people in the U.S., and by 2050, more than 15 million people will suffer from the debilitating disease.

Thinkstock/istockphoto

ON THE WAY to visit my mother one recent rainy afternoon, I stopped in, after quite some constant prodding, to see my insurance salesman. He was pressing his efforts to sell me a long-term-care policy with a pitch about how much I'd save if I bought it now, before the rates were set to precipitously rise.

I am, as my insurance man pointed out, a "sweet spot" candidate. Not only do I have the cash (though not enough to self-finance my decline) but I also have a realistic view: Like so many people in our 50s — in my experience almost everybody — I have a parent in an advanced stage of terminal breakdown.

It's what my peers talk about: our parents' horror show. From the outside — at the office, restaurants, cocktail parties — we all seem perfectly secure and substantial. But in a room somewhere, hidden from view, we occupy this other, unimaginable life.

I didn't need to be schooled in the realities of long-term care: The costs for my mother — who is 86 and who for the past 18 months has not been able to walk, talk, or address her most minimal needs and, to boot, is absent a short-term memory — come in at about $17,000 a month. And while her LTC insurance hardly covers all of that, I'm certainly grateful she had the foresight to carry such a policy.

And yet, on the verge of writing the first LTC check, I backed up.

We make certain assumptions about the necessity of care. It's an individual and, depending on where you stand in the great health-care debate, a national responsibility. And yet, I will tell you, what I feel most intensely when I sit by my mother's bed is a crushing sense of guilt for keeping her alive. Who can accept such suffering — who can so conscientiously facilitate it?

In 1990, there were slightly more than 3 million Americans over the age of 85. Now there are almost 6 million. By 2050 there will be 19 million — approaching 5 percent of the population.

By promoting longevity and technologically inhibiting death, we have created a new biological status held by an ever-growing part of the nation, a no-exit state that persists longer and longer, one that is nearly as remote from life as death, but which, unlike death, requires vast service, indentured servitude, really, and resources.

This is not anomalous; this is the norm. Contrary to the comedian's maxim, comedy is easy, dying hard.

Seventy percent of those older than 80 have a chronic disability, according to one study; 53 percent in this group have at least one severe disability, and 36 percent have moderate to severe cognitive impairments.

Alzheimer's is just one form — not, as it happens, my mother's — of the -ever-more-encompassing conditions of cognitive collapse that are the partners and the price of longevity. There are now more than 5 million demented Americans. By 2050, upward of 15 million of us will have lost our minds.

This year, the costs of dementia care will be $200 billion. By 2050, $1 trillion.

Make no mistake, the purpose of long-term-care insurance is to help finance some of the greatest misery and suffering human beings have yet devised.

I HESITATE TO give my mother a personality here. It is the argument I have with myself every day — she is not who she was; do not force her to endure because of what she once was. Do not sentimentalize. And yet…that's the bind: She remains my mother.

She graduated from high school in 1942 and went to work for the Paterson Evening News, a daily newspaper in New Jersey. In a newsroom with many of its men off to war, Marguerite Vander Werf — nicknamed "Van" in the newsroom and forevermore — shortly became the paper's military reporter. Her job was to keep track of the local casualties. At 18, a lanky 95 pounds in bobby socks, my mother would often show up at a soldier's parents' front door before the War Department's telegraph and have to tell these souls their son was dead.

She married my father, Lew Wolff, an adman, and left the paper after 11 years to have me — then my sister, Nancy, and brother, David. She did freelance journalism and part-time PR work (publicity, it was called then). She was a restless and compelling personality who became a civic power in our town, got elected to the board of education, and took charge of the public library, organizing and raising the money for its new building and expansion. She was the Pied Piper, the charismatic mom, a talker of great wit and passion — holding the attention of children and dinner-party drunks alike.

My father, whose ad agency had wide swings of fortune, died, suddenly, in that old-fashioned way, of a heart attack at 63, during one of the downswings. My mother was 58 — the age I am now — and left with small resources. She applied her charm and guile to a breathtaking reinvention and personal economic revival, becoming a marketing executive at first one and then another pharmaceutical company. At 72, headed to retirement but still restless, she capped off her career as the marketing head of an online-game company.

For 25 years, she lived in an apartment building in Ridgewood, N.J. Once a week, every week, she drove into Manhattan to cook dinner for my family and help my three children with their homework — I am not sure how I would have managed my life and raised children without her.

This is the woman, or what is left of the woman, who now resides in a studio apartment in one of those new boxy buildings that dot the Upper West Side — a kind of pre-coffin, if you will. It is even, thanks to my sister's diligence, my mother's LTC insurance and savings, and the contributions of my two siblings and me, what we might think of as an ideal place to be in her condition.

A painting from 1960 by March Avery, from the collection she and my father assembled — an Adirondack chair facing a blue sea — hangs in front of her. Below the painting is the flat-screen TV where she watches cooking shows with a strange intensity. She is attended 24/7 by two daily shifts of devoted caregivers.

It is peaceful and serene.

Except for my mother's disquiet. She stares in mute reprimand. Her bewilderment and resignation somehow don't mitigate her anger. She often tries to talk — desperate guttural pleas. She strains for cognition and, shockingly, sometimes bursts forward, reaching it — "Nice suit," she said to me, out of the blue, a few months ago — before falling back.

That is the thing that you begin to terrifyingly appreciate: Dementia is not absence; it is not a nonstate; it actually could be a condition of more rather than less feeling, one that, with its lack of clarity and logic, must be a kind of constant nightmare.

"Old age," says one of Philip Roth's protagonists, "isn't a battle, it's a massacre." I'd add, it's a holocaust. Circumstances have conspired to rob the human person of all hope and dignity and comfort.

When my mother's diaper is changed she makes noises of harrowing despair — for a time, before she lost all language, you could if you concentrated make out what she was saying, repeated over and over and over again: "It's a violation. It's a violation. It's a violation."

MY MOTHER'S CARDIOLOGIST had been for many years monitoring her for a condition called aortic stenosis — a narrowing of the aortic valve. The advice was do nothing until something had to be done. But now that she was showing symptoms that might suddenly kill her, why not operate and reach for another few good years? What's to lose?

My siblings and I must take the blame here. It did not once occur to us to say, "You want to do major heart surgery on an 84-year-old woman showing progressive signs of dementia? What are you, nuts?"

Here's what the surgeon said, defending himself, in perfect Catch-22-ese, against the recriminations that followed the stark and dramatic postoperative decline in my mother's "quality-of-life baseline": "I visited your mom before the procedure and fully informed her of the risks of such a surgery to someone showing signs of dementia."

You fully informed my demented mom?

The operation absolutely repaired my mother's heart — "She can live for years," according to the surgeon. But where before she had been gently sinking, now we were in free fall.

Six weeks and something like $250,000 in hospital bills later (paid by Medicare — or, that is, by you), she was reduced to a terrified creature — losing language skills by the minute. "She certainly appears agitated," the psychiatrist sent to administer anti-psychotic drugs told me, "and so do you."

MY SISTER COMES over every morning. She brings the groceries, plans the menu, and has a daily routine for stretching my mother's limbs. I'm here a few times a week (for exactly 30 minutes — no more, no less). Her grandchildren, with an unalloyed combination of devotion and horror, come on a diligent basis. 

A few weeks ago, my sister and I called a meeting with my mother's doctor. "It's been a year," I began, groping for what needed to be said. "We've seen a series of incremental but marked declines." My sister chimed in with some vivid details.

We just wanted to help her go where she's going. (Was that too much? Was that too specific?)

She does seem, the doctor allowed, to have entered another stage. "Perhaps more palliative care. This can ease her suffering, but the side effect can be to depress her functions. But maybe it is time to err on the side of ease.

"Your mom, like a lot of people, is what we call a dwindler," said the doctor.

I do not know how death panels ever got such a bad name. Perhaps they should have been called deliverance panels. What I would not do for a fair-minded body to whom I might plead for my mother's end. 

The alternative is nuts: paying trillions and bankrupting the nation as well as our souls as we endure the suffering of our parents and our inability to help them get where they're going. The single greatest pressure on health care is the disproportionate resources devoted to the elderly, to not just the old but the old old, and yet no one says what all old children of old parents know: This is not just wrongheaded but steals the life from everyone involved.

After due consideration, I decided that I plainly would never want what LTC insurance buys, and, too, that this would be a bad deal. My bet is that, even in America, we baby boomers watching our parents' long and agonizing deaths won't do this to ourselves. We will surely, we must surely, find a better, cheaper, quicker, kinder way out.

Meanwhile, since, like my mother, I can't count on someone putting a pillow over my head, I'll be trying to work out the timing and details of a do-it-yourself exit strategy. As should we all.
 


Excerpted from an article by Michael Wolff that appeared in New York magazine. ©2012 by Michael Wolff, all rights reserved. Reprinted with permission. 

 

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